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It seems easy to say you will be present for a patient while visiting, but there is a huge difference in showing your presence AND being present.

I had a long talk with a good friend of mine of how people need to unplug while visiting and focus. When I say focus I mean truly focus when a patient is talking. There are emotions and feelings behind ever word, stutter and pause. I used to have a charging station in the hospital and at home so people could go and re-charge and yet unplug at the same time.

When I had visits or conversations with people whom I felt were constantly in distraction mode, I got so sad and wanted the visit over just as it started. They might be checking their phone, social media or anything else. They were simply distracted. I would tell them outright and most of the time it went over well. Every once in a while, someone became defensive or found my comment offensive, but they promised they would focus and unplug on the next visit and usually they did just that.

There was one time I had a heart to heart with a good friend. I told her I was going through a lot and the next visit or even our next communication or text and exchange that I really wanted to talk about issues that had been bothering me personally. We didn’t usually “go there”. I wanted to really talk about what has been physically debilitating me. She agreed she would be more present and listen. During the first 10 minutes or so in the next visit, we had “real talk” but I felt she minimized my feelings or the people or situations that caused them. She was nonchalant about them, responding as though they were non-consequential. For just a minute, I thought she was “getting it” then it quickly dissipated and she returned to her home base of Distraction City. She asked if I was finished with the tough stuff. Was I? Would I ever be? Did their have to be a limit? She was constantly checking her email blasts and CC’s from her company and the next email thread, responding to texts and Snapchats and obsessing over celebrities she covered for her job, her social media posts and replies. I didn’t get it. Was visiting me that painful? Or was she that distracted in every day life encounters? I was right in front of her painstakingly seeking her awareness.

We couldn’t even watch a TV show together in peace. She was obsessed with live tweeting and tagging the event and the cast of the show. Why was she so detached from reality and intimacy? Was it a way to cope with seeing the decline in my features and in my positivity? I was frustrated but truly more disheartened than anything. I wondered if she could she just live in the moment and enjoy the space we shared. I realized at that moment, this person was a limited friend.

What is a limited friend?A friend who feels more comfortable on the periphery.A person who is unable to be present and responsive to anything that feels real or timely to you. They constantly dodge the real issues, are good with one-word answers and talk about anything else but your struggle. When they need you they have no problem reaching out. Their visits are filled with anything else so as not to “have to deal with” why they are really there.

So this friend served her purpose in my life as a comic distraction. She always “fit me in” between her busy life . This friend made sure I knew how busy and hyper scheduled she was in between meeting a friend for dinner, dates, drinks, work events, etc. She would half read my longer emails, texts and then blame it on something else going on that needed her attention or being high on weed. She would rush in and rush out of a visit, what patients call a “drive by.” Staying just long enough to say they visited, but never long enough to delve into anything real OR deep. They usually end the visit just as you open up, leaving you feeling more vulnerable than before they came. If this friend’s visit coincided with other visitors, you could see her debate whether to quickly leave or bring the spotlight back to her. They always need a distraction while visiting. They reported on news for a living but were obsessed with talking about celebrities. I never met anyone who was so obsessed with the celebrity subjects they covered (not even good ole Perez Hilton). They shouted that obsession from the social media rooftops.

For some people who were limited it meant partaking in my medical marijuana, arranging a reunion or group visit and one went as far to leave booze in my apt so she could imbibe on every visit to relax after work. Yea leaving booze at the apartment of someone in liver failure, who has doctors and nurses seeing the bottles and my efforts to explain them was a mess. I really wish I was kidding.

It’s hard when you realize you have a friend who has become so limited especially, when it’s someone whose company and banter you’ve enjoyed. Sadly, I realized they are more present online than offline in the real world. They are so disengaged and disconnected from the present tense and reality.

Regarding the social in social media. Here is another example.

I tried to ask another good friend to listen and they couldn’t give into that request. The litany of excuses made me feel awful for expressing anything other than gratitude for the little she could give. I knew her struggle with time management could be remedied with a shift in focus and attention. I thought that if people spent half the time listening and stepping back to be truly present to friends that they did being “present” on social media then their issue would be addressed. She was someone who liked and celebrated everything and everyone on a social platform. Like clockwork wishing everyone happy wishes on their birthdays and milestones. Liking every status, every photo of a child and parent, wedding, engagement, celebration and milestone or even an inane status that said nothing at all (figuratively). A very sweet way to interact publicly, but what about your friends and family who need to be more private? Your friends who need a private dialogue and support.

No one is going to remember if you like every status or photo, reply to a thread, a tag, a post, a comment, social or political commentary on a pressing news topic or celebrity. No one is going to remember if you wished everyone you ever came in contact (and no longer have contact with) happy birthday online. It’s not a social competition of the ages. Minutes spent constantly refreshing your feed, “liking”, commenting and interacting online can be used to be present for others in their time of need. It is an easy fix to capture time and to be present, yet most people don’t, but complain about having no time in the day. Do it one day, add up the minutes you spend on social media over a week that can be repurposed for quality time.

I spent the last 6 months of my life on a social media detox of sorts. I wasn’t active on Facebook and was in and out on Instagram. I had no presence online. Every precious moment, birth, engagements, birthdays were all commemorated in a non-social forum. I sent intimate notes, gifts and precious photos and shared tender thoughts and memories in a private setting or in private notes. It was my way to say thank you and create a space for forgiveness and gratitude for all they do and have done. I could say more than a few words and be a really sincere person. Greetings in an online forum are all about ceremony and celebrating those in a public forum. So people can “see” your outreach and assess your relationship based on that exchange accordingly. I got more responses from the notes, gifts and sentiments I sent in a private and intimate manner than I ever did on “social media” public.

My private, social presence made me feel closer to people than I had been in years. It gave me a new sense of self and more importantly a sense of purpose at a time I was losing my footing. I was more connected, even though I am so gravely disconnected to any forms of normalcy. It invigorated my spirit to have a true connection with people in a way that didn’t have to be seen by thousands and could be treasured by that ONE person.

I think it’s most important to be present, whether someone is sick or just trying living their best life. To really take in moments, reflect on memories, see the beauty in the small and sacred. Drink them in, those moments won’t last forever. You don’t want to look back remembering the moments you “liked”, when you could have moments you “LOVED”.

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What not to say and why not to say it:

1. How are you feeling?

How are you?

What’s Cookin?

Believe in miracles.

Just checking in for an update.

Hi, How are you? Not in terms of illness, I know you don’t like that.

Since your message is humorous I can tell you sound like and are back to your old self. I am assuming you are doing well since you responded or reached out. There are medical miracles all the time so I know you and your dad will be one of those miracles (ignoring the fact that he has Dementia and I have a terminal illness).

These questions and statements seems like a harmless greeting, but it is difficult for patients to answer. Put yourself in their shoes. Dealing with illness and treatments is a lonely, often painful, frightening journey. They could fully answer, opening a Pandora’s box of emotions and physical side effects they are reeling from. They could tell you that your high hopes and assumptions are not based in reality but they probably won’t be that downer of a person. The supporter may not know how to respond or may not be capable of responding. They may not even want to hear the reality of your condition. By assuming being communicative is synonymous with road to recovery is a hard bubble to burst. Sometimes it’s easier to let people simplify your illness and not share the dark truth. Sharing a real and candid response to such a greeting or casual question/assumption can be overload, and emotional “over-sharing.” Typically, the supporter’s replies become delayed responses, or worse, one-word answers to a biblical length explanation of the patients’ true feelings. Or the patient receives responses of pleasantries, platitudes or rash assumptions and simplifications that the supporter thinks will boost the patients’ spirits. This only makes patients shut down. It feels as though the supporter is asking “how are you doing?” to be polite. They ask that harmless question because it’s the right thing to do or, just as likely, the supporter simply doesn’t know what to say because they have no idea what is really going on.

Think first. Is this a genuine question? Are you truly available and present for the real answer? If not, then your caring gesture is lost. Ask it when you have the time to be present. It feels as though the inquiry was another item on a list to be checked off for social conversing. I got a lot of “XO” text messages which were banal and reaching out without delving further. HONESTLY, I couldn’t blame anyone for that kind of outreach, without being able to emotionally delve in much further.

What can you say instead?

“I am truly here for you. Whether you want to say anything or nothing at all. I am here and can just sit with you, say nothing or everything under the sun. Just call on me.”

“I’m thinking of you and beyond that I want you to know I want to be supportive and take any daily burdens off of you. I want to be the friend that you can come to and feel comfortable sharing with”. (Mallory Saks Zipkin)

“Can I do anything for you or your family? Pick up meds, get groceries, bring items or creature comforts from home to the hospital or run errands? What can I do to make your hospital room more home like?” I wish more people had followed through on my efforts to have them visit my dad and spend time with my mom.

2. “Aww”, “I’m so sorry”, “OMG”, “OY”, “I don’t know what to say”, “Yikes”, “That sucks”, “Ugh”. “Oh wow”. “That sounds awful and so hard”. “Oh no”. “What I’m saying is nothing in comparison to what you are going through”. “I can’t even imagine what you are going through”. “I want to tell you this story, gossip, innuendo or drama because I know it will come as a welcome distraction”. “Miracles happen every day you will be one of them”.

Yes those are normal responses to an ever-sucky situation in life. Stop and think that this person believes that a friend who asks the question truly cares enough to be present when the patient really opens up. These types of responses to a long outpouring royally STINK. To the patient, it trivializes the situation, as though it is no different from the every-day rather than a frightening, life-altering and painful struggle. #thestruggleisreal. (sarcasm noted).

Better responses:

We are so often listening to reply and not listening not to listen.

Friends help best by offering to respond to patients’ descriptions, or simply to say:

“I’m listening. I just want to let you vent. But if you want my input I am here. ”

Supporters feel they should have a handy reply ready. But the better reply is to simply listen without a solution. If an opinion is warranted or asked for, then give one. Steer away from hero worship and bravery and focus on how you can help them with their doubts and feelings about treatment, their unknown future and their fate.

It’s so sweet for you to say a bald head, bruised body, frailty and jaundice is courageous and beautiful. The patient also knows it’s another pleasantry and it always feels insincere and fake. Friends are trying to normalize the situation and the patient and they do so with the best intentions. But patients do feel different, most likely frightened by their own appearance. Do you constantly complement your healthy friends about how great they look? Do you boost their ego and assess their beauty? Probably not, so those messages do not normalize the situation with your sick friends.

What can you say instead?

“Nothing”. It’s not an elephant in the room; if you think it is, it’s because it’s your elephant.

Sometimes silence is golden and over-complimenting is overrated. We live in an ego boosting culture that assumes we need to pay compliments so regularly that they lose their authenticity and feeling. Don’t tell them you will look great soon; they rock a cropped cut effortlessly and should wear that hairstyle all year long. Just say you love them that’s so much more impactful.

4. When Can I visit you next?

Stay with the pleasure and love in the visit now without further pressure. Patients want the visits, but know that they are struggling emotionally and physically to make it through the time spent with the supporter. It is hard for them to try to think of another visiting time or when they can “be on” for your visits. Especially with unknowns about medical appointments, treatments, side effects, numbing fatigue and pain. Allow them a pressure free visit that doesn’t need follow-up and hyper scheduling. With no agenda or guilt.

Many of the “when can I see you next” inquiries come from people being polite, but who never visited again. This actually hurts more. It’s like going on an uncomfortable date, or social interaction and instead of a polite “goodnight, take care…” you blurt out WHEN CAN I SEE YOU AGAIN??? Or we should totally do this again! You think I could have made a clean break. Shit! (And then think “OOPS”).

What you can say instead:

“I love you. I am here for you and spending this time with you was a gift. Thanks for letting me be there for you. It is all I wanted. I want to check in, but don’t want to overload you, so let me know if it’s too much. I can take it.”

And remember to observe and check-in with the patient to know when it’s time to go. He or she may not be having a good day or starting to show signs of fatigue. Patients have limited energy that they must conserve for coping and healing, mentally and physically. But they also know your visit may be the only social experience they have for a while and feel guilty you came all that way for them. That you took the time out of your day for them. This is why hospitals urge visitors to limit the length of a visit.

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We could really change the way we act and interact and really change the world with kindness. I hope the art of gratitude makes a come back.

The simple act of thanking someone for his or her outreach, kind words and gestures. Gifts are to be acknowledged and treasured more than their material assessment and measurement. But more importantly the relationships, friendships and connections that come along with these material items or wonderful words should be treasured. We live in a “thanks” culture when we should be dwelling in the possibility of gratitude.

Whether the gifts are for weddings, births, engagements and milestones. I made a truly concerted effort to support everyone’s charitable causes and charitable runs, walks, races and group events. I feel as I got sicker, I became more driven to use my time celebrating people’s moments from afar, but making an effort to send tender notes and gifts to celebrate “their” moments. I also LOVED BRINGING PEOPLE TOGETHER. I legitimately had high school, college, camp and work reunions at my bedside while suffering internally (because it still brought me joy to reconnect and connect people).

I began to really appreciate the fine art of a THANK YOU. Whatever form of acknowledgment was truly treasured (mostly tenderly and privately). Those moments of recognition of a small act of kindness left a big impression on me. The gesture spoke volumes without really saying much AT ALL. To be honest, less than 30% of the people I sent gifts to for the special occasions, ever acknowledged anything was ever sent. Sadly, with almost all the gifts I send you get a notification when a present was delivered physically or electronically. We live in a digital GOTCHA age. It sucks for all parties involved sometimes. I really wish I didn’t know and could lose myself in the notion that they hadn’t received it. It’s hard to know the art of gratitude and just a simple thank you and nothing more is lost in our digital age. I remember I sent a wedding gift to my friend, Lori Ehlrich in the throws of planning her wedding and after her wedding, took so much time to figure out where to send the wedding thank you card, it bounced back from my apartment, to my mom’s to the hospital. I was really touched, truly. The same kind of selfless and driven outreach ensued with the birth of my friend Jessica Gellar’s twins.

Regardless of the delivery and acknowledgement, I always felt a need to say how grateful I was for anything big or small, so anyone who would express any form of that same sentiment, warmed my heart in the biggest way.

Gratitude is an altruistic act and art form. Something that should come with ease, without prodding for follow-up and follow through. Thank you sentiments and the growth of gratitude is on a rapid decline in our culture. The outreach seems to be waning and dissipating. Grand gestures and gifting seem to be part of the norm. Why is gratitude such a rarity? Why is it so hard to recognize the gesture? We take gestures for granted. We expect what we think we deserve.

Conversely, you don’t need an occasion to celebrate someone. Random acts of kindness and gratitude are treasured, beloved, but rarely bestowed. They usually come with motive and never JUST BECAUSE. That’s why silly forced things like gratitude challenges exists.

Take a few extra moments in your day, to write a few extra words to someone. Celebrate your relationship, gratitude and exhibit your giving and selfless spirit. There is nothing more touching than someone who can take a few moments aside to treasure someone and realize they have a relationship, friendship or family that should be praised, spotlighted and loved.

(This is a collage Tara Kipnees made for me when I could not attend our friend Rochelle Matlin’s wedding during chemotherapy. I will never forget the time and thought that went into creating this on Tara’s end. Even more significant and thoughtful, was the fact Rochelle posted a picture of this and my Whole Foods cheeky gift card as the first photo she posted after her wedding day. Who does that you may ask? Before we saw her white dress and beauty on Instagram we saw her selflessness, thoughtful nature and sheer capacity for gratitude by honoring my absence, my love for her and her husband and my unique gifts. I never have forgotten this gesture).

Next time you receive a gift whether timely, belated or out of the blue, take the time to say THANK YOU. I wish I had more moments to treasure the beloved and show MY LOVE. My physical decline inspired me to deeply focus on acts of kindness and gratitude. Saying thank you for just being them for just being supportive and loving.

Schedule moments of gratitude in your calendar in your day (or set an alert). Make the thank you effortless and seamless. Make your gesture limitless.

I truly hope beloved moments of just telling someone how much he or she means to you grows in popularity. I pray the circle of gratitude continues to grow in its ease and essence.

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Fear of Missing Out Syndrome can mean assuming if you miss out on one event or outing, you will be sidled with a syndrome that makes you ache with envy. Well using the word FOMO around a patient with a chronic or terminal illness seems FAUX and FALSE. It is like telling a real sufferer of Obsessive Compulsive Disorder that you have “minor” OCD. There is nothing minor about OCD. Think about if you told someone who is bipolar, has borderline personality disorder or schizophrenic that you are kind of psychotic and crazy. Think about if you said I am so full I could just puke around a chronic bulimic. The list goes on of comparisons in the mental health field.

People who are bed-ridden, homebound, insulated or spend their lives in a hospital room or treatment/long time care facility are CONSTANTLY MISSING OUT. They cannot experience the fear or missing out because they are always missing out. It is a chronic disorder that goes hand in hand with their chronic illness. It makes social media hard to cope with on a daily basis. WHY? On the social media, everyone is out living their best selves or telling the world that is what they are doing. They proclaim what they think people want to hear. It may be an exaggeration to look cool and chic. That is the reason social media is a massive hyperbole.

Sufferers of chronic and terminal illness have nothing to show off on social media. Why? They are not current socializing or any social mood. They could state how they really feel and scare everyone off in one “post”. So they stay on the sidelines. They watch and observe all the comings and goings on their feed. They don’t have much to contribute on a forum that focuses on the innate ability to brag and humble-brag. The patient hopes one day they can post “I AM IN REMISSION”. Until that day arrives they are consummate observers.

Their fear of missing out is not so much a latent fear it is A CONSTANT FEELING. So, if you think your fear of missing out is real. You post the hash tag #thestruggleisreal #FOMO, #Humblebrag, #luckygirl, and #sorrynotsorry. There are so many more but I want to spare your gag reflexes. Your real hash tag should be that you are #blessed. Not the ironic #blessed hashtag people post. Your humble brags are not humble nor brags, they inhabit a criteria section we call bold braggart under the guise of “cute” language. You did not just #wakeuplikethis. That hashtag was hyper-planned and muted in tones of undetectable war paint. Your actions are pragmatic and not at all soaked in the honesty of that natural beauty and synchronicity of that hashtag. They are veiled in careful planning and sadly not irony.

You have your health and that is a blessing. Be authentic in your life and also be in authentic in what you post and choose to air publicly. Nothing is more humbling and gratifying than authenticity.

Anything you miss out on can be revisited again. You can live your best life with your faculties intact and have the tenacity and courage to attend great events and opportunities in the future. To you the struggle may be real, but maybe table “the struggle” when speaking to someone who is chronically or terminally suffering. You have so many chances to attend a party, event, concert or dinner in your future. In the end you won’t be missing out anything by keeping it to yourself. Conversely you will be authentic and that in turn makes you the pinnacle of support and admiration.

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In my darkest hours film saved me. When I was so sick and I couldn’t move or even speak I had film. There is no better feeling in the world when you discover a new film that is under the radar. That instance when you see a film that you had zero expectations for (going into it) and it inspires and helps you. A film that is under the radar but somehow manages to raise your heightened sensitivity and awareness. A film that allows you the ability to enjoy the medium all over again. A film that allows you to laugh and learn at a time in your life where you didn’t think that was plausible. Some examples of films that I saw this year (that fit that description and that helped me) were “Obvious Child” and the documentary “Supermensch”.

Film was my career of choice. Film and screenwriting (later on) became my therapeutic outlet of choice to tell my story, in my words which were imbued with both humor and sadness. I later sold that screenplay and it is currently in development (hopefully pre-production by the time the people read this post). I wrote for comedy writers during my illness and was so excited to see my material… well materialize.

Film was my escape and the source of my excitement. I was a member of the WGA (Writers Guild of America) and the PGA (Producers Guild of America). During my illness I received some film screeners in advance. The plethora of my film screeners came from my film family. A family that stood by me through everything. A family that helped me when I couldn’t help myself and had faith that I would turn the cards I was dealt into something for the greater good. Even when I thought they were nuts and was riddled with sadness.

This isn’t a post about what mentor did what or what friendship with which actor or actress changed me (they know who they are and we have had our private gratitude filled moments). This is how a medium inspired me, became my calling, changed me, excited me and made me want to better my life and be a better person TIME and TIME AGAIN. They were right I did turn a medium I loved into a way to entertain and bring joy to those in grave suffering. I did just that. I used the resources and connections I had amassed to create a film and TV screening program at NYC hospitals. The program is now seamlessly operating productively at 3 large NYC Hospitals and 2 subsidized long-term care facilities (and another NYC facility sponsored by the American Cancer Society). So I brought my love of film and its ability to bring people together to a whole new healing level. I am beyond proud of this program.

I fell in love with film at early age. I used to hang up movie posters and clippings from the New York Times weekly. My friend Shanna and I recently recalled my love for my weekly Friday trips to my mailbox. Why? On Fridays my copies of Premiere Magazine (RIP) and Entertainment Weekly were in my mailbox. I remember watching films in Shanna’s “great room” like it was yesterday. No eating in the “great room” but lots of movies including our favorites “Mad Love” “Bye Bye Love” and “Girls Just Wanna Have Fun”. Okay we snuck in our Snackwell’s snacks sorry Aileen and Matty. When Shanna came to my house, we jetted downstairs and spent hours watching “Empire Records” “Just one of the guys” and “Teen Witch”. If you have never seen Rachel Antonoff’s Fashion recreation video of “Teen Witch’s Top That” you are missing out. My classmate, Daniel Silbert is in the video.

My camp friend, Zoe Meltzer, had a connection to TV and film and at an early age I caught “the acting bug”. Though to be fair it was not my natural calling (I was mathematically challenged). Zoe’s father, Howard, worked at HBO on different docuseries (remember those “family in crisis” series back in the 90s). He was the OG of the HBO original movies and I was entranced by his producing skills and knowledge. He seemed to have a passion for what he did and I wanted that same zeal. He placed Zoe and I in WNET Mathnet series and till my early 20’s I still got 59 cent residuals from the cameo and background work. Who said PBS, Channel 13 and WNET was a not for profit station? Though I was awful at math the experience brought me great joy. Even my prom date was a child star on my favorite childhood series “Brooklyn Bridge”. Well to be fair we traveled in Israel together via USY in my teen angst ridden years, but hey I still call it fate filled. Talk about a calling being eerie, destiny and kissmeant.

The walls of my childhood bedroom didn’t have pop stars or bubblegum Teen BOP clippings. My childhood wall was an ever-changing clipboard of movies that I wanted to see and took the time to see. It was an inspiration board of sorts. They were my inspiration to do my schoolwork because they were my hefty reward. I remember I treated myself to a 9:45am showing of “Good Will Hunting” (after a series of high school exams).

I used to rewind and re-watch movies we rented (before they had to be returned to Blockbuster). I did this because I wasn’t ready to let go of the film. I wanted to hold on and snapshot my favorite moments. I wrote reviews for my school and college newspaper. I have had the same DVD player I got when I was 15 years old. I took it with me to every new apartment and home I rented. I had my built-in VCR/TV in my apartment until 2009. I just couldn’t let go of the film memories.

The moment I knew what I wanted to do with my life was in the year 2000. My good friend from high school (Matt Goldman) and I attended a test screening of a film called “Bounce”. We were film geeks and history buffs, though ironically we bonded over our love for “Empire Records” and the film’s epic soundtrack. We had been goofing off in Wayne, NJ the weekend before with our friends, Ben Jorgensen, Evan Winiker, Julia Bressman and I believe Josh Nadel since he was going to be my senior prom date. And maybe my friend Daniel Silbert only because I cannot imagine I was hanging out with those people and he wasn’t there. I think we were goofing off at one of their houses in Bergen County (Matt and I lived further south in NJ).

We went “up there” on weekends to “hang” with the kids I felt who got me the most. Even though I hung out with probably a different group of friends at school sometimes, these “Bergen Boys and Girls” were artsy, musically inclined and smart as hell. Today these people are some of the most intelligent and driven people I know. I feel pretty damn fortunate I have pretty much kept in some form of “touch” with everyone I mentioned above. These people made my later years in high school EASIER and MORE ADVENTUROUS, CULTURED and all around JOYFUL.

I loved attending concerts and punk shows with the “guys” and the girls who also were that kind of chill (pictured above, Julia, Abby and Rachel). We went to VFW rock shows and even (gasp) Fred Durst, Kid Rock and Eminem shows. We went to diners late night and sometimes went our separate ways and reconvened at a midwest airport at 5am with our “WASH U college tour guides” (ahem me and Julia). Sorry Amy Watenmaker (ALROSENB@wustl.edu) for being your raunchy weekenders.

We were wild and free-spirited and didn’t take ourselves all that seriously. The guys, Julia and I ended up somehow in the parking lot of the shopping center/mall in Wayne, NJ (because Josh lived there I assume). A film recruiter (which I was later in life) handed us these hot orange paper passes. He told us to RSVP via email for a movie screening. Not much has changed in that department even today, that is still the “recruitment” process.

So Matt and I decided after school (we were in our senior year) that we would listen to music at his house and then go to the screening. His mom was the coolest and so was his whole family and kinda let us do what we wanted. Like my parents, they trusted our instincts that the screening was not a scam. Let’s be honest we thought it was super cool and had our hopes high. The movie “Bounce” starred Ben Affleck and his then girlfriend Ms. Paltrow. This was back in the day when the movie studios paid their random assortment of demographically appropriate attendees in CASH. We got paid $10 in cash. WOAH.

After the film, they had a question and answer section. I gave my honest opinion on the film. If you know me well, my opinions are honest and brutal (especially concerning film and TV). So I said the movie itself was a copycat version of a movie I had seen last year with my father called “Random Hearts”. It was also a plane crash/love story hybrid movie plot. The movie starred Harrison Ford and Kristin Scott Thomas and came out in 1999. I gave my opinion about the film and felt like I had earned my $10. Well to my surprise, the head of the studio (head of Miramax now the Weinstein Company) was in the back row with the star of the movie (Ben Affleck). I knew who he was immediately because of the whole success of his movies from the year before, “Shakespeare in Love” and “Good Will Hunting”. Mr. Weinstein was a regular on the awards circuit and pushing indies (my inspirational bread and butter). I learned later on this was a regular “thing” when first testing a movie. I also learned later on all the Weinstein distributed movies were first tested at this random multiplex in Wayne, NJ (thank you Jon Favreau and Billy Bob Thorton for enlightening me).

Anyways, I digress, so the head of the test screening firm took me aside and said, “someone would like to speak to you”. I got nervous (I needed that 10 dollars for gas money). Mr. Weinstein in all his legendary intimidation came up to me and told me he appreciated my opinion and asked my age. I said I was 17 and I loved film. At this point Matt was waiting for me outside the theatre. I explained my love and the impact it had on my life (briefly). He gave me his business card introduced me to Mr. Affleck and asked for my mailing address and email address so I could be on future screening invite lists. He said they needed less “Yes Men” and more opinions. Mr. Affleck was apathetic as he was in those days. When I met him later on in life (I worked on a few of his films marketing them and testing them) he was nothing but an intelligent and sweet guy. He also has a truly beautiful gift of being able to write and write very well. I told him about our run-in and he was a gentleman as was his partner in crime, Matt Damon. One of my favorite and most genuine actors I ever got to work on a marketing campaign with. I was a champion of Project Greenlight (their series about helping undiscovered filmmakers and screenwriters) which is coming back in 2015. They gave me a signed copy of the original series as a gift when I started development on my screenplay.

So till this day I remain on the Weinstein Company invite list. I have no idea how I stayed on it through the Miramax to Weinstein Company transition. When I worked in the film and test screening subset, (later on life) I was floored every movie studio used the same movie theatre to test their films (in good old Wayne, New Jersey). It all came full circle (almost like it was scripted).

I even met Harvey Weinstein later in life and my cousin, Katie Broomfield worked directly for him. Though Harvey was a competitor at all the award shows I attended and reminded me of that sheer fact. He was a machine and I admired him (while also remaining scared shitless of his tone and the way he screamed). I interviewed for a job working for him and his brother Bob after I was an NBC page. I will be honest I was intimidated to no end and he sensed it. I also did not get the job. The girl who did get the job ended up being a good friend of mine when we met at one of her screenings. To be frank, there are few people in life who scare the shit out of me. Harvey is one of them in a really good way. He pushes you to think and work hard and yells and kicks your ass. He also taught me how not get caught when you don’t recognize someone (Conan relayed the same tip when I was page for his NBC show). Always say nice to see you and not nice to meet you, because it’s a harmless greeting just in case you have met them before (and then offend them before you even start a conversation).

Anyways Harvey later partnered up with both studios I worked to distribute his films. He went from indie to mainstream film in the past 10 years. I recollected our run-ins when I saw him out one night pre Golden Globes 2007, he at least pretended to remember me and said “Nice to see you”. He also laughed when I told him my story of interviewing for him. He was surprised because it seemed I had balls and was a ball-buster. I said I was and he paused and said “You want to be well liked don’t you?” I responded “Yes I enjoy being well-regarded in the film community and the friends I made in entertainment”. He shouted, “That’s your problem KID. People who get the shit done and really make shit happen are not well liked they are feared and because of that they are revered”. That always stuck with me and he was right.

I won’t mention who in the Hollywood also intimidated me (because this isn’t the place for that) and if you know me… You know who they are and who made me cry during a press junket by calling me the “C” word. I wish I got to work with 3 actors I truly admired by watching them during press junkets (they had intelligence and wit galore). Those actors were Sam Rockwell and Chris Evans and Kyle Chandler. They were so different yet so similar in many respects. They were the kind of men who exuded manliness but also had a wicked sense of self, humor and awareness. I challenge you to youtube.com interviews of them (especially Chris Evans) and be amazed of how affable they are. Believe it or Kyle Chandler wants do a comedy rather badly and he would be great at it.

Friend wise, I always said my friend Robin Arzon is the same as pit bull Harvey Weinstein. See pictures below for badassery incarnate. She is a ball buster, people look up to her and idolize her (which I tease her ceaselessly about). She has fangirls and fanboys. But in the end, we call each other out on BS and have the most honest talks you will ever have. We are softees that try to be too tough to crack or “get it”. When we have our alone time, we break down those walls we put up to be “touch chicks and ball busters”. I told her once that had she chosen a different path, she could have a head of studio like Harvey or a movie mogul. That to me is the highest compliment.

My love of film expanded to all mediums especially film critique. I wanted to be my own version of Roger Ebert or A.O. Scott. I recently saw “Life Itself”, (the Roger Ebert documentary on his life reviewing film, his inspirations and film centered relationships). How it was more than a career for him. Roger Ebert saw his life as a movie. He expounded upon the fact that film taught him so much. Film criticism takes sheer finesse. It guided his life and his choices. He passed down those tender memories and moments to everyone he knew. He spotlighted people who were undiscovered and took the time with film, as if it were one of his children. That’s how I felt. I also was a habitual viewer of Roger and Ebert’s “At the Movies” television show for years. Then watched as my friend, Ben Lyons, who took over the syndicated broadcast. I met Roger Ebert many times and he was always so kind and generous to me (even when we had a lousy film to screen for him). He laughed that I was star struck more by him than any of the movie stars I was ushering down the red carpet and into his junkets. I respected him because he respected the medium (and the honesty and critique that went with it).

As I started to become ill I wanted to take my passion and see if it could be used as a source of enjoyment and escape for others. I started creating programs at the local NY hospitals and Cancer treatment centers in NY. When you are in the hospital you miss out on so much. You never feel ahead of the curve and experience every joy after the fact. People try to engage you during their visits with new and current films and TV. You feel so lost and behind. You never are the first to see anything.

So I asked my friends who worked in both the television and film mediums to help me out. I wanted to create advance screenings of films (before they were released in theaters). I wanted these screenings to be at the hospital or long-term facilities. I wanted them to be for all ages. I also wanted to screen new TV shows and pilots (to support my friends who worked in the medium). To sweeten the pot, I asked if some of the stars, directors, writers and producers could attend the hospital screenings. I wanted the creators and stars to have a dialogue about how the show or film was created and what inspired the content. My friends organized the screenings, provided free healthy snacks and gift bags and even allowed the hospital staff to attend. It made me so happy. A lot of the filmmakers and actors who attended were friends of mine and seeing them share their love of the film medium with my fellow patients made me so elated. The experience allowed me to see the crossover potential of the film and television medium.

Here is a snapshot of why film saved my spirit and my soul.

When I started my first job in film I was working for Matthew McConaughey and his production company, J.K. Livin. I was such a fearful upstart. I could spew out facts like a human imdb.com, but when it came to working a real job as an assistant and production assistant I struggled deeply. I struggled with camera operation and directions. Since I struggled with a life-long learning disability, I woke up much earlier than anyone else. WHY? I wanted to study my daily tasks and make sure I was meticulously organized for my boss and my crew.

I was recovering from a drug addiction (Cocaine addiction) and had recently spent 3 weeks in outpatient rehab at St. Luke’s Roosevelt and was trying to live out my dream while finishing my bachelor’s degree locally. I was attending NA (Narcotics Anonymous) on the side. I signed up for an internship with J.K. Livin (as it was posted that way on my school’s internship site). I had a gut feeling no one (but IMDB crazy old me) knew it was Matthew’s company. I worked on 2 films that summer “Sahara” and ” Failure to Launch”. I got to film and live in Austin, Texas. I got to be supported by my boss’s friends who were also in Narcotics Anonymous. He also had experience with friends who had addiction proclivities. His co-stars struggled as well and they were candid about it.

After my summer, I was offered a job at J.K. Livin after graduation. This job offer meant I had to live in Austin. I was torn to leave my family and my hometown of New York. My dad was getting sicker and I wanted to be close to home.

The previous summer I had spent my time working for a movie-marketing firm that ran film screenings and recruited people to attend them. During that time I had my first taste of networking. After the screenings and clean up I would network with the film studios for which we recruited. Universal Pictures was our main client and there was this super friendly marketing executive named Scott. He would always take all the recruiters out after the screening. We once had a great night at a drag queen bar after our drag queen theme movie test screening (the movie was Connie and Carla). You could tell all the recruiters wanted out of the recruiting game and dreamt of being a studio rep. I knew I was just a number but it was my dream. I got to become great friends with Scott. He enjoyed my humor and encouraged me to go for it. I set him up and match-made him with all my friends until I successfully set him up with his future wife (my friend Jodi who worked as an agent at CAA and now is a successful producer).

So I declined Matthews offer (citing that I didn’t want to work in Texas at this point in my life and wanted to be among my family and friends). That was one of my biggest “What If” moments of a road not taken with Matthew (even back then before the McCounaghey Renaissance). I knew he was intelligent and so cerebral and kind, even if Hollywood saw him as Rom-com or Action movie man. I explained what my dream job was and without flinching he told me was in pre-production for a movie called “Two for the Money” at Universal Pictures. He helped me get a job in the NBC Page program, which could be a stepping-stone to my dream job.

I loved the page program. I worked for Conan. I sat people for each nightly show (which filmed in the daytime). I made the best of friends. The writers on Conan’s show were the best. We would all socialize after tapings. It was a simpler time when Louis CK still wrote occasional pieces for (Conan, Letterman, Rock and all entertainment show awards on cable and network). All the writers are now pretty big names in the industry NOW, back then they were just guys trying to make it big. I still was into baking and cooking my pies for the crew and writing staff who did all the heavy lifting (see below). It was a bonding experience and many people I met became my friends and moreover inspired me creatively. They inspired me to write and transcribe my experiences. Writing became my therapeutic outlet and those men (and women) who I met during those times inspired me till no end. Their raw honesty made me see how valued a perspective and outlook on life could be.

After six months, I applied for a marketing assistant position at Universal Pictures. I thought I had zero chance, but I would be charming and hoped the Page Program would be my “in”. Matthew wrote me a glowing recommendation and positioned his next 2 films at Universal (not because of me obviously… just need to clarify that one).

Scott the man from my screening days was now a marketing manager. He was also getting ready to marry my friend Jodi. At this time the incredible Stacey Snyder was head of the department. She eventually became head of the studio. I was lucky enough to call her my mentor (before she left to work at DreamWorks). I got hired and was happier than I could have ever been. My first day on the job, was prepping for the premiere of the 40 Year Old Virgin and prepping for the release and marketing blitz for Knocked Up. The rest was movie magic history.

I spent 5 years at Universal (then I went to Sony Pictures for 2 years) and film became part of me. I traveled around the world to film locations and film festivals.

I think the most important element was film became my family. My dad took business school classes with me to learn more about the medium. I got my MBA and determination to always learn more from him. Every Monday (during the 2006-2007 school year) we went to Baruch and Hunter College Campuses to learn about the connection between film marketing as a business and ad sales crossover. We went for pizza at Patsy’s Pizzeria every Monday. My dad never asked me for any favors within the confines of my film connections. So I always made sure to make him my go-to guy for events. He and I loved three things: baseball, food and film. I loved growing up with him watching movies and eating whatever we wanted. My mom was always on a health kick or diet or trying some elimination or Oprah diet or the fat-free Snackwell plan of the 90’s. So we always snuck out. We loved eating and seeing films, it was “our secret thing”. We loved going to the movies and having snacks we never ate at home. He used to take me out to eat after my Springfield Softball games as well (at Cioffi’s we always shared a plate of cavatelli and broccoli). Then we would go see a movie. I played in a league with the Falkin family and it was competitive and as spirited as one could imagine. Same could be said for the company league I played at for Universal Pictures for 4 years (short stop). Peer pressure still exists and it was fun!

When it came to my job, my dad dutifully waited on every premiere and screening line. I always wore a colorful coat or outfit so he could find me. He never bragged about who I knew or who I met. But I wanted him to share in the joy because my favorite film memories were shared with my father (mostly all comedies like Naked Gun and sports movies like Major League). To know my dad, you knew he was the coolest guy. He was the epitome of class and ceaseless humor. He treated me with more respect and reverence than I deserved. He was also a massive charmer and flirt.

There were many times I took my dad as my date to events. It made him so happy (and also he was the only one who didn’t ogle celebs). I was dating his UES building doorman at the time and taking this doorman to premieres was never really an option. My dad also actually ate the food being served. I have three favorite film memories with my father that shaped me.

At age 8, my dad started taking to me see movies at the famed Ziegfeld Theatre in New York. Some were new films, others were what we can revivals. He explained the historical relevance of the theatre (when I bickered that I wanted to go to one of the fancy stadium seating theaters). We went to see “Far and Away” with Nicole Kidman and Tom Cruise. I still love the soundtrack till this day and Enya’s songs from the film. I loved it and so did my dad. We loved epic historical love stories that crossed over all genres.

My dad went to the bathroom and asked me to wait for him. So as a young girl, I did my dance routine outside of the men’s bathroom (jazz hands and high kicks and all). I used to dance to the music of the HBO theme song before the feature presentations and coordinated a dance to it that my dad loved. I always had my discman with me. Well it caught the attention of a tall skinny man in a baseball cap that asked me my name and told me he loved my dance moves. I nodded thank you but said I wasn’t allowed to talk to strangers, my dad was in the bathroom for over twenty minutes and I was told to wait and not talk to anyone. He asked how long I had been waiting. I replied two renditions of girls just wanna have fun in my head. He laughed and asked my dad’s name.

I told the guy and he went back in to see if my dad was ok. My dad wasn’t ok, he had broken his glasses and was trying to repair them and couldn’t see. So this man brings my dad out. I asked my dad what had happened. He said he was in shock, he had slipped and broke his glasses and was out of sorts. So I saw my dad so scared and feeling so guilty thinking someone would take me. He was crippled with fear and had lost track of time and then was worried about me. So this nice man told my dad he knew someone who could fix his glasses less than 5 blocks away on the spot and gave us directions. He also told my dad he would be happy to take us.

I asked the man why was he being so nice to us? Did he go to our temple? Was he a parent at my school? He said he was not. He had a baseball cap on so I couldn’t really see his face. But as we moved into the more lit parts of the Ziegfield, it hit me who this man was. His name was Kevin Bacon. He loved my dancing and singing because he saw it in himself. We thanked him profusely and told him to join us for Italian food at our favorite place “Mangia E Bevi”. He declined but promised to try it in the future.

Thirteen years later I took my dad to the Universal Pictures premiere of “Two for the Money”. My dad was a kid in a candy store meeting my former boss, Matthew and his idol, Al Pacino. Standing next to us on the unisex bathroom line was Kevin Bacon. I pinched my dad so hard he screamed. Mr. Bacon asked if my father was ok. My dad’s attention to details was never subtle or easy to get. Of course dear Kevin who is a hero of sorts, turned around and we relayed our story of the Ziegfeld theatre and the glasses incident. He remembered and said he always wondered if I became a performer. I told him I actually worked in the marketing department for Universal Pictures and worked for the star of the film before that. He seemed like a proud father. It was so validating and made everything come full circle. We spoke and my dad had told him about his Parkinson’s Diagnosis and he got us in touch directly with the Michael J Fox Foundation. I told Kevin we worked out at the same Upper East Side gym as Tracey Pollan (MJ Fox’s wife). My dad went there for free because it was the only NYSC with the Silver Sneakers Program. So we were invited to a fundraiser after Kevin took down my work information.

Later in life, I worked with his brother in laws healthy ice cream brand with my company, Fixed Naturally. I also got a job on Kevin’s Fox Network show “The Following” preparing meals for one of his co-stars. Also, later in life as my dad became sicker, I started working with Ryan Reynolds on the Michael J Fox Foundation (Ryan and I had worked together on 2 films and his dad at Parkinson’s). My parents and I did every Parkinson’s walk until my dad could no longer walk. My dear friend Melissa Blechman also founded the Blechman Foundation for PD Research. http://blechmanfoundation.org/

If that night couldn’t have been any better, my dad did meet Al Pacino. Mr. Pacino assumed my father was my date. As I held my dad’s hand to help keep him steady and keep his balance (as I usually did with his Parkinson’s) I got a wink from Al Pacino. I went over to Al to ask to introduce him to someone who was a huge fan. I told him I worked for Universal and his co-star was my former boss. Mr. Pacino got super flirtatious and touchy and I was taken aback. He said sure I will meet your man. I said “Mr. Pacino that’s my father”. He had thought my dad was my date and I had an older man fetish. He also told me I had to call him Al.

I talked to “Al” about working with his co-stars recently, Chris O’Donnell and Billy Crudup (see below). We shared out mutual admiration for their kind nature and how funny both men were. I told him my dad took me to see “Scent of a Woman” when I was 10 years old after I had to walk out of a film called “Lorenzo’s Oil”, because it was too graphic medically. It was so funny and my dad being super cool. He was didn’t take offense to it and kind of loved the fact that Al still “had it” and thought he could have a chance with a 23-year-old.

(My first premiere at a re-imagining of the Wizard of OZ at the Ziegfield with my mom 1988).

I never told my dad I wasn’t freaked out by the flirtation and assumption. Al was a legend and whenever he and Jack Nicholson flirted with the young ladies at our premieres I was flattered and flirted back. They are legends and my dad’s heroes it only felt natural, since my dad was the most natural and unbiased flirt of all time.

Also coming full circle, years later I got to take my dear friend Matt Goldman to his first film premiere and we went to a premiere at the Tribeca Film Festival my company was hosting. It was a sweet high school themed movie with Zoe Kravitz and Ezra Miller. Matt was studying to be a teacher in Boston. I showed him the red carpet, there was a question and answer section and afterward we partied. I organized a high school reunion of sorts with many of those same people from our Wayne parking lot years (with a few additions, Noah, Pam and Jordan and Darren). It was at my favorite watering hole and if you know me you know I am going to say “3 Steps”. Then you can sigh aloud in disbelief that 3 steps bar no longer exists.

Annual Reelabilities NY Disabilities Film Festival:

Here is an addendum of how my crazy movie/imdb.com brain works: This addendum is dedicated to my film buff and co-hort in cinematic crime KODY GURFEIN and her male twin counterpart JASON CYGIELMAN.

As kody says this is how my brain works (see rules of attraction scene with Kip Pardue)

So yesterday I read an article where Halle Berry extolled her dismay that no other Black actresses had won the Oscar for best actress (since her epic win). Then my mind wandered thinking Lupita won last year and Octavia Spencer won for “The Help” and those were recent wins. I also remember that Whoopi Goldberg won for the movie “Ghost”. Oh but they were supporting actress winners, ok never mind Halle was right.

Then I think didn’t Viola Davis win an Oscar for “The Help”. Then I remember it was a surprise upset and Meryl Streep won. Then I remembered that Emma Stone (who also starred in “The Help”) was nominated this year and Octavia Spencer was at the Oscars and so was Viola Davis. I wondered if they had a mini reunion. Then I wondered if Emma Stone watches “How to Get Away with Murder” or if she watched “Red Band Society”.

Then I remember I loved marketing “Easy A” and kept telling my friends how great it was and they all agreed. I had the best time at test screenings and got to invite so many of my friends. I remember how kind Emma Stone, Patricia Clarkson and Stanley Tucci were. Then I turned on Bravo’s Watch What Happens Live and see Tim Daly is on tonight’s episode. Then I see how well he has aged since “Wings” and I remember my friend Lori Ehlrich and I used to run into him in midtown east NY all the time. Then I realized Thomas Haden Church (from “Wings”) was in “Easy A” and was sad I never met him or Lisa Kudrow on set. Then I get sad because I think about all of Amanda Bynes mental health woes.

Then my mind wandered over to the movie “Ghost” (because I was thinking about Whoopi) and how I haven’t seen it on TV lately. I remember it used to be on HBO all the time. Then I remembered the president on “Scandal” (Tony Goldwyn) is the bad guy in “Ghost” who dies when the window slams on him. Then I remember that scene gave me nightmares. Then I think how Tony has aged so well in the last 25 years since “Ghost” came out. Then I remember Tony Goldwyn is an accomplished director. He directed my favorite actor Sam Rockwell in “Conviction”. Then I remember Tony Goldwyn was on an episode of “Designing Women” and he was the first openly Gay and HIV diagnosed character on a network comedy. Then I think about how far we have come especially with “The Normal Heart” that aired this year. Then I am reminded of not so fond of memories of working on “The Hulk” with Edward Norton. I remember being sad at my meetings with my favorite actor at the time, Ed Norton. Then I wonder what it would have been like to work with Mark Ruffalo as the current Hulk (because I am thinking about “The Normal Heart”). Then I think about how great Chris Evans and Mark Ruffalo are during their press junkets for “The Avengers” and how much I love a good Kyle Chandler interview. I also think about Eric Bana the original Hulk and see what he is up to. He is a fantastic person and actor and was spectacular in Munich.

Then my mind goes back to “Ghost”. I remember the famous clay scene with Patrick Swayze and Demi Moore in “Ghost” and how I didn’t understand it and how my mom had to explain it to me at age 8. Then I think about how Leslie Nielsen did an amazing spoof of the clay making scene in the Naked Gun 2 & 1/2 sequel. Then I am reminded both Leslie Nielsen and and Patrick Swayze are dead and I get sad. Then I think about how talented and ageless the Presley women are in film (and how hot the matriarch was in the Naked Gun series).

Then I think about more spoof movies of the 90’s. I think about the “Hot Shots” movies and I forgot Charlie Sheen was in them. He was so funny and crazy with his Rambo spoofs. Maybe that was foreshadowing for Tiger Blood and Winning? I then wander over to imdb.com to see what happened to that hot Italian actress who was the lead in those “Hot Shot” films. Then I find out she is still acting, looks great and was in a show I liked called “In Treatment” on HBO.

Then I get sad because I forget Lloyd Bridges from “Hot Shots” is dead and amazed that Kirk Douglas is still alive and writing poetry. I remember how great he was in “Joe Versus the Volcano” and “Seinfeld”. Then I see there was a “Seinfeld” reunion at Jessica Seinfeld’s Baby Buggy event in LA yesterday and I smile.

Then I remember Josh Charles from “In Treatment” also had a TV death this year that shocked me on “The Good Wife”. Then I go on imdb.com to see what he is up to and see he made a cool indie with Sarah Silverman. Then I remember Sarah showed her “bush” in one of my favorite movies “Take this Waltz”, by one of my directorial idols and my mentor Sarah Polley. Michelle Williams was also in that film and I wonder if she has any movies in the cannister because I adore her as a person and actress. I still have flashbacks to the scene of “Take this Waltz” and “Blue Valentine” that always moved me.

Then I remember I loved seeing Josh Charles yearly appearances at Rachel Antonoff’s fashion show with his now wife. He will always be Will Gardner and Christina Applegate’s boyfriend driving the fast food hot dug truck in “Don’t Tell Mom the Babysitter’s Dead”. His sister in the movie will always be remembered as the mom in the movie “Bye Bye Love”. It was Eliza Dushku’s first movie as well and one Shanna Wollack and I watched over and over. WHY? We were products of mixed families of divorce and related to it.

Anyways, I also see Josh Charles will be in the Wet Hot American Summer Netflix reboot. Then I realize Josh Charles was referenced on the latest episode of “Girls” and I found it such a meta crossover of two different generational shows that I watch on Sundays (for vastly different demographics). It was an episode I related to probably more than any of them because of the Good Wife reference “OMG Will Gardner is alive and at the bar”. Also for the amazing reference of hooking up on Israel teen tour at Auschwitz hit home. For any of you who were on my USY ISRAEL PILGRIMAGE Teen Tour in 1999 (group 8) you know why. We all had boyfriends on the tour within our group and would not hook up while in Poland while visiting the death camps out of respect, but as soon as we touched down in the holy land, we really touched downnnnn. Some of us even engaged in the unmentionable on the EL AL plane. My boyfriend, Fred Marks and had a PG make out.

Also, the reference to Hannah’s father being gay. Now, my father was always a massive charmer, so much so that men hit on him and he would be charming back. Whenever he was in the locker room at any gym, he always mentioned he was ogled by men and enjoyed knowing all men saw he still had it. Oh Papa Fix. Now if there was a hooking with the doorman scene in this episode as well, it would have all came full circle.

Then I remember more spoof movies and my brain goes back to Lloyd Bridges and “Hot Shots”. I remember Carey Elwes is in the “Hot Shots” movies and look up where he has been. He’s still acting and writing. Then I remember how amazing “Robin Hood Men in Tights” was with him in it and how many times I watched it with my dad laughing so hard. Then I remember how great “The Princess Bride” was and think damn Robin Wright is as gorgeous as ever and it’s weird to see prickly Saul from Homeland do a comedy.

Then my mind wandered over back to “Ghost”. I remind myself that Demi Moore was sporting the cropped hairdo before Halle Berry ever made it famous. Does she get credit for making that trendy and retro? Then I look up everyone’s ages. Then I realized how young Demi Moore was when she had Rumer Willis and Rumer will now be on Dancing with the Stars this season. She is the only recognizable name in the cast. Then I remember she had a budding movie career and I marketed some of her films in 2008 and 2009 and wonder what happened. Then I read up that Bruce Willis will be starring in “Misery” on Broadway and also read he has never done Broadway.

Then I remember how well James Caan has aged and is always so pissed off in his movies. He was so awesome in “Misery” the movie. I love his voice. Then I remember he was in “Honeymoon in Vegas” which is now also on Broadway. Then I remember Nicholas Cage from the “Honeymoon in Vegas” is related to the Coppola dynasty and I think about how James Caan was so awesome in “The Godfather”. I wonder if Nicholas is close with his cousins Roman, Sophia Coppola and Jason Schwartzman. I also remember how much I used to think Scott Caan (James Caan’s son) looked like my friend, Drew Morcheles.

I also get sad because I haven’t seen Kathy Bates (from “Misery”) in any films lately. Then I remember she went topless in one of Jack Nicholson’s second to last films “About Schmidt”. Then I realized I took my dad to that movie premiere and get sad. Then I think about how “Major League” was our favorite movie that we watched over and over again. Then I look up how well those men have aged and get sad I no longer have a crush on Tom Berenger. Then I realize Tom Berenger looks Like Eric Roberts (who is having a career resurgence). Then I remember Tom Berenger was in “Third Watch”. Then I realize how much I miss that show and wish all the seasons were available to stream somewhere.

Then I get sad Jack Nicholson from “About Schmidt” no longer acts. Then I realized I worked on the last film he did “How do you know” and feel slightly responsible that was his last on screen appearance. Then I read up on Jack and hear he is no longer an avid Lakers fan and is willing to sell his court-side seats (via a TMZ video I saw). I start to think wow times have changed.

Then I get sad realizing Whoopi does not really act as much anymore since she has been on “The View”. Then I remember she was hilarious as herself in Chris Rock’s “Top Five”. Then I read Chris Rock panned the movie “42” about Jackie Robinson in the DVD extra of “Top Five”. Then I feel more guilt because I screened that film a ton at the hospital and agreed with some of his points and beat myself up for not being more self-aware.

Then I think about Rosie Perez on “The View” (since I thought of Whoopi). I wonder if she still has a feud with J.LO from their Fly Girl days. Then I think about Spike Lee because he gave Rosie Perez her first big break in “Do the Right Thing”. Then I get sad because Spike made one of my favorite movies “The 25th Hour” with Edward Norton. The first film to shoot at Ground Zero post 9-11. Then I can’t even think of a movie I have seen of Spike’s since and wonder what gives is he stumped creatively? Then I remember how much I loved the final scene of “the 25th Hour”

I then realize Rosie Perez will be on broadway with Larry David. Then I start to search for recent press interviews with Larry David and my day is made. See you don’t want to know what my mind goes through when watching film or TV series. That is just a glimpse of how much I want to remember and discover in a simple viewing. Blame the film buff in me, the Dora the Film Explorer or my ADHD. Either way this is the normal path my brain takes. Now you can see why I need to shut my brain down with morphine and not be a Googling GEEK.

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When I was dealing with my treatment I was lethargic, moody and insulated (inwardly and outwardly). I thought about putting an auto-responder on my Gmail and phone. I chickened out because I knew I would want to respond to a select few and didn’t want the auto-responder to be a communication barrier. People were used to my delayed responses. There was an acronym that went around in the messages I received: “NNTR” (no need to reply). That acronym was used for people who wanted to reach out to me and send their thoughts, prayers and wishes. They wanted to be there for me and also inform me there was no need for a reply.

I was taking a time out from being a human auto-responder and readily “available”. I actually WAS RELIEVED after checking the home screen of my phone the other day (after a long rest or a hazy morphine induced slumber) and seeing no messages that needed tending to. Because generally I was in no mood to key stroke, read and deal with time sensitive material. It sounds sad if you know me (since before my illness I was such a social person and constantly responding and in communication mode). I was nicknamed by my friend, Drew Morcheles, as the Schechter Connector. My other friends just deemed me a social director and friend wrangler for nights out. I loved connecting people. It was my truest passion when I was health and sick. So much so that I barely ever powered down. But with my illness, I hoped there would be no messages and I just could just escape in my mindless binge viewing and my sleeping (since I wasn’t in a social mood and that included social media).

In talking with my Cancer Care group, we came up with some chat habits that “socially” irked us. The worst was baiting a reply or prompting a response. There was bubble texting, when you check your phone you have 7 messages for a one sentence text. Or baiting the patient who is trying to rest, unplug and JUST BE with messages where we looked like ASSHOLES FOR NOT BEING ABLE TO FORMULATE A REPLY. Our silence was not about them, come on now! It was even sadder when it was people who knew better. It is also selfish, we are not like your “normal” and social friends, so don’t use the same social selfish “norms” to prompt a response and interact. It is riddled with guilt and unfair.

1. G-chat/Facebook chat/Facebook messenger/Facebook Tagging:

GMAIL: Green light does not mean GO. Whenever I would sign on G-chat, which wasn’t very often, maybe once every 3-5 months I would get bombarded with messages. Now that seems harmless right? It was from people I hadn’t heard from in some time, months, even a year or years. I think people regard G-chat as a safe haven for free-flowing chat. Umm not really. It’s a real-time conversation, which insulated patients try to avoid. I would often sign in and not know I was signed in until I got bombarded. We don’t want to be rude, but also our gut response is “REALLY”?

G-chat is a cop-out. You see a green dot next to my name and for you that means carrying on a conversation and checking in, as if it’s not super weird since I haven’t heard from you in a long time. Let’s not address that fact at all. Even worse, most of the conversations, start with asking how I am feeling, then quickly transitioning to normal conversation. You know as if they asked about the elephant in the room, got that out-of-the-way and it’s totally cool to act “normal”. Often when I would sign on, people would ask me for favor, a set up or gossip. I call this massive G-chat balls.

I had one friend use it as a way to ask about celebrities and my celebrity friends and vent about the high stress of their work and love life. They would say the most disturbing things about their significant other, then in our next interaction glossed over it like IT NEVER HAPPENED.

Others would bitch about people I set them up with or ask me for relationship or dating advice. You get I set you up for free right? I am not a dating coach. When I am in pain I take the time to send bios, pictures and set you up and even sit through your range of emotions and opinions on said set up. I sit through rants that lacked courtesy, gratitude and displayed constant complaining. FUN TIMES!

My all time favorite was a friend who sent me a gawker.com video of someone masturbating on a subway. That tagline to the message they sent read, “thought you would find this funny”. I mean I get it, I’m a sarcastic dirty birdie, but that is a step way too far. Do I really get a chuckle from seeing a middle-aged guy fondle himself for a two-minute runtime on gawker.com?

Other people would constantly ask me about about my industry friends and any dish I had. One bold friend once took my phone when we were sitting with my dad (who was in palliative care at Mt. Sinai Hospital) and forwarded an email sent by a celebrity friend of mine to his own email address. I was shocked and appalled but also not surprised which made it all the more well…sad.

I legitimately believe till this day, that this person had not so latent homoerotic feelings for this actor. Any topic on this celebrity that was “trending” he would be sent my way. Like he needed to know “is this true?” or does he wear a hairpiece or very odd personal questions. He would always start the inquiries with, “I thought asking you would cheer you up and distract you”. Never mind that this celebrity’s privacy is built on trust in a relationship and I have signed so many non disclosure agreements that would make sure I stay silent.

But I took it with a grain of salt because this person is the type of person who posts on everyone’s wall to communicate “effectively”? Including letting the social media world see all of his communication with his significant other. You know the type. The constant poster you have to decide whether to delete from your social media friends. The one who updates about everything you didn’t want to know about. The person who is posting on the wall of his significant other in a highly planned, programmed and filtered manner. My friends and I used to joke that they were probably sitting on the couch planning their coordinated posts and replies, instead of enjoying each others company and living in the moment. They probably posted and said out loud, “We are the cutest”. Instead they documented everything and anything you wanted to know (including jokes about their bowel movements and jokes with overt sexual undertones and overtones).

2. Facebook Etiquette:

Now whenever I would make the mistake of responding to someone’s Facebook message, (in my message box that I rarely checked) that was another “oh man” moment. First of all, I had a friend who I would email and text and even talk to on the phone, yet the only way they liked to reach out was Facebook messaging me or writing on my wall. Then they were surprised and paranoid because I didn’t respond. Really? If you have a persons REAL contact information why do you choose social media to communicate “effectively”. What are you trying to prove publicly about your relationship with that person?

The other error I made was when people would message me on Facebook and carry on a full on conversation in the public domain. In spite of the fact that they had a more private and personalized email and phone number for our communication. Replying created a back and forth (because Facebook messages and now messenger shows when you have read the message and replied). So it became a crazy carousel. I announced in blogs, in my emails, my mom’s social media posts and my own that we don’t check Facebook messenger. No impact, but, again get upset that they had done something wrong when we wouldn’t respond. Finally, I realized no one reads the full message, they “skim” and then send a message like “how are you feeling or doing” when the message already spelled that out. So I made peace with it and stopped posting anything on social media.

People write on my wall asking how I was doing and note that I hadn’t posted in a while so they wanted to reach out. I emailed them or had my mom reach out to fill them in. But, I also wondered why not text me or email me privately. It feels weird to be publicly called out when you have all my contact information. There is probably a good reason I am MIA and choose not be active on public social media. Maybe I do not want to vocalize my pain on a social forum and have a pity party that can be seen by thousands. There have been many times when patients retreat into his or her disease and depression and avoids a public presence. I still felt pressure to reply, and did offline. Guess what? Did the person take the cue? No, he or she replied to my private message on my public wall. I came to realize that they just wanted people to see that they care and check in. Sadly, they saw less value if it was not in a public forum.

The Taggers: Please don’t tag me in random posts to promote your event. I can have a million people comment on a post I should never have been on. I am moving away from a life of “likes and comments”. Don’t make me a de-facto host or ask me to post or promote your event. Lastly, please don’t tag me in random photos from a long time ago in one evening, when you feel you haven’t heard from me. Or start liking all my old photos to push me to respond in nostalgia form. It actually doesn’t make me feel better. It pretty much creeps me out.

3. Group texting, CC’s and Reply all’s:

Reply all emails and putting people on a group CC is putting people on blast and exposing peoples’ email addresses and phone numbers (that they would rather keep private). There is always going to be that one person who always “replies all.” You know the kind and realize to never put them on an open email again because others follow suit and keep replying. Then it starts to include other kinds of “sharing” or pop-culture nonsense making those on that list ready to strangle the sender. OH GOD! Hey, I have been that sender. I was being lazy and swiftly learned my lesson. Think about when you put someone on the spot and how uncomfortable that is? These emails put many others on the spot and worse you are spamming them. BCC is your new BFF, meet, mate and procreate.

Say it’s a holiday, Jewish/Christian whatever your religion may be. You think send a group text, put everyone on the same message and save time. Have random people reply to one another to save you a whole extra minute to copy and paste the text into a private and singular message. Such a great idea and so in tune with the thoughtful holiday spirit (note my sarcastic tone).

When we get a group text our automatic gut response is, “you’re the worst”. I hear you can unsubscribe to group texts, but if someone can tell me how right now without Googling it, you win a prize. I once was so annoyed and on transdermal pain meds I screen-shotted a group text and thought I sent it to my best friend. I think I said something like; yea I just got home from the hospital and just what I wanted for the holiday, a group text with unknown numbers to get spammed into the holiday spirit. Well I was super out of it and screen-shotted it back to the unknown number group message. Awesome!!! So the whole pack of unknown numbers came after me, horrified and calling me names. Yea, bully the girl on pain meds with a tumor. So don’t put me on a group text or email!! If I mess up and reply all to the group message, well I have a tumor and am on meds that cause extreme brain fog. What’s your excuse for poor social graces and cues?

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I came in contact with a lot of whispered white lies that we in the cancer community call, “social media snafus”. They could be so easily avoided if the person didn’t get caught posting contradictory statuses or posts.

People would tell me they were sick, or not in town, busy, immersed in family or personal drama, etc. I always felt badly for anyone who cancelled, because his or her excuses were always valid to me. I always heavily sympathize with illness, being pressed for time or spread too thin. I choose to find the best in people.

However, those feelings would quickly vanish when those who were sick would also tag themselves at the gym, proud that they were back doing hardcore cardio or doing activities one would never engage in while sick. Gym selfies are kind of hard to see for those canceled on due to “illness”. Others told me they weren’t around but tagged themselves at hotels, shows, movies, restaurants, bars — literally steps from my apartment or hospital. One person tagged themselves in the hotel that was half a block away. If I would question them about it I was met with more excuses. They were having a stay-cation at a hotel etc. I always realized people post and tag themselves to show people they are A-OK and they are living the life. Forgetting that they are being pretty thoughtless with people who aren’t able to have the same life bragging rights. Those same people that they are canceling on. It seems as though coming clean was as unfathomable as wearing a suede jumpsuit with massive camel toe.

Others would tell me after the fact they were in town (or not at all) but take pictures on Instagram/Facebook that they hand landed at LGA/JFK/EWR. You know the pictures “I’M HEEEEREEEE”. Those stung sometimes because I corresponded with these weekender arrivals (and friends) very often. They would stealthily post or drop the info after the fact that they were in town. Either they would tell me after the fact, sometimes tell me late into their short visit or proclaim their arrival via social media. I just started to do eye rolls eventually when people (who were out of towners) would post the typical NYC pictures and I would discover their arrival or outings after the fact via social media. That is when I decided to take a step back and break from social media.

I wrote most of it off as not fully thinking about it before posting (which is the ultimate downfall of most people who proclaim, complain and post on social media). Also, whenever I had the balls to confront people on it (in a Fixler-esque sweet, sour and sardonic manner) I would be hit with excuses. These excuses were not limited to the length of their trip, multiple obligations and the list went on and on and on. I never heard you know you are right I FUCKED UP or MY BAD. So I just kept it to myself and started to isolate more to avoid disappointment and hurt. I used to be the most social person even being communicative during illness, but this method of canceling and not showing up made me feel more and more reclusive. I didn’t want to feel more pain and be riddled with lofty expectations and hope.

A word to the wise, this topic is talked about at length in Cancer Care and other types of support groups. The visitor assumes the sick (aka us the patient), must be isolated and doesn’t bother with social media. Or perhaps they simply forget how public social media is so they are free to post about their “normal” activities. Well, sometimes it’s our only way to participate from afar, even if what we see on social media is a mixed bag. Even if they get caught in the act they lie, deny or worse, have more excuses. Yes, they were in town but “barely” and are in town for a hot minute. They would say they are only steps away from you but only for a night or two.

The visitor would say, I had plans and didn’t want to cancel. Then the friend blames the patient’s compromised immune system for canceling. I began to have less and less sympathy as I realized that such people were being less than honest. Damn, I got frustrated! No one likes to be lied to or to call people out on false excuses or having to cancel. Using a compromised immune system and going on the defensive never felt quite right, either. Why not simply say, “Hey I’m sorry you’re right, I messed up. I take full accountability and responsibility”.

I lost a lot of respect during my illness for people who resided in Excuse City. The same people who jumped to a defense. I found their actions to be a major offense. I respect people who take full responsibility and “mea culpa-ing” will earn only favor in a patient’s eyes. We know we have to isolate. We would give anything to have your social lives. What a relief not to worry about excessive nausea and vomiting in any form of transportation.

So if you are going to cancel, reschedule or embark on a minor white lie, remember, don’t post something that will get you into trouble and shine light on said lie in a public forum. Seeing all those posts makes us think that you would rather do anything than sit with us. You can tell us the truth, whatever the reason. It’s so much better than to see the truth online. And it’s so much more hurtful and offensive. Lies do more damage than the straight “talk” and when you are deceptive, it makes us question future visits with you.

Excuses to we patients are as bad as telling us your outreach went to spam (which we futilely check with no results) or telling us you called and our voicemail is full or the connection is bad or texts don’t go through. We don’t want to take the energy to catch you in a “cancel and post”. It’s exhausting and it hurts, especially from those who say they want to support us but don’t know how. This is not a the answer to your HOW. Deflection and desertion feels like rejection.

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So what is a User “Schmoozer? It is not an earthed Dr. Seuss book. It is the term I use for people who buddy up to you during your illness under the premise of expecting something in return. Some hints are subtle. Others are as blatant as a Real Housewife need for press or an In Touch Weekly “spread”.

I was going through my sign in/memory book from my fundraiser tonight. I was hit with amazing memories and sentiments. I snapshotted the entries and photos of friends I knew would appreciate their presence there that night. However, a small number of the people who attended I don’t regularly speak to anymore or I only hear from when they NEED SOMETHING. When I realized what they ALL had it common it hit me they were User Schmoozers!! They buddied up to me and visited me at my most vulnerable BUT they always had an AGENDA.

Once, I “fixed” their problems, “fixed them up” with a set up or opened up my resources and connections to them they were gone. My friends joked I was the original “Fixer” before Olivia Pope and Scandal became fashionable. The visits, the outreach, the check-ins either vanished or became less frequent. Is it weird to say I became used to it? Though it also hurt like a MOFO I won’t lie. It became as usual in its frequency as people not saying a simple thank you or an expression of gratitude for acts of kindness or gifting (in the helpful advice piece “gratitude the great:).

Here are some examples of people who went missing in action as soon as their desires and wishes were met. Take them as classifications we can all learn and grow from. Everyone makes mistakes in how they conduct themselves, but maybe you can all see these and learn from them. These examples and are not extolling shame. These are examples that everyone and I mean everyone, makes mistakes with in their outreach and how they conduct themselves in the presence of the ill.

Case 1: The career booster. A friend who was unemployed and recently dumped after moving to a new city for her boyfriend. Once she came back she spent multiple visits venting about the break up and being unemployed. She brought me some tabloid magazines and seemed to be really there for me. I decided to help her on the job front and then help her on the boyfriend front. So I introduced her to a good friend of mine who was head of an event and marketing firm. In time they hired her full-time (she freelanced for them a few months beforehand). And just like that she was gone from my life. She never checked in and never reached out. She had the job and she was set. She came to my fundraiser and hung out with all her new colleagues who I was also friendly with. Her college friends were also in attendance and they actually came to visit me at the hospital, helped me at doctor’s appointments and were some of my favorite people to have around me. They also said it was so nice I got this friend a job. They said she is in a much better place because of you. I kept silent about how sad I was that she used and schmoozed. I mean she has been working there for 4 years at this point and I have not heard a peep from her. When she got what she wanted, I never heard from her again. I let it go. I had enough negativity going on.

Case 2: The set up scenarios. This referred to people who visited who dropped the single bomb (not with any subtlety I may add). They also asked how I was doing then said something like this: “I was looking on Facebook to see how were you doing and I stumbled upon your photos or a friend’s profile and I wanted to know if he/she were single”. Some people even asked for group visit with my “hot friend”.

My hospital room became an unscripted episode of the Bachelor and Bachelorette. I remember my mom watching this all go down in the hospital lounge at New York Presbyterian. The same goes for people I set up. They would pretend to check in on me, but also throw in, “Oh and FYI I never heard from said date, any idea what happened”? There were even friends who said I think it will distract you to set me up. Or can I sign on your Facebook and make a list. Can I come visit and go through your Facebook with you? Oh also, just saying, can we go through your Facebook and Instagram to set me up. It will be so fun for you I promise! It will distract you!

Case 3: The Charity Case. The offender who reaches out to check in on you, but also wants to know who you can recruit and help for an event. Can you use your contacts for signed swag, raffles, send out an email blast? Is it easier to share your contact list with me and I can send it out for you. Some asked if they could tag me or I could tag them for their event. But, of course, they asked how I was feeling beforehand, so not to totally miss the mark (sarcasm inserted here).

Case 4: the Networking Negotiator. Same went for networking contacts. People who show you a whole lot of love, when you are doing something for them. There was a friend I was friendly with since I was a teenager. We were never consistent friends, a “let’s grab a drink soon” type friend. I knew we would never grab a drink but appreciated the effort. I attended every birthday and going away party. I sent her scripts and pieces to my writing colleagues and agent friends and the she wanted to visit every week. It’s the least she could do she said. She was the most unfocused visitor I ever met. Eyes down, phone down, and focus on her. So the visit was more of let me tell you all my drama, listening to this will be SUPER FUN and DISTRACTING for you. When I set her up with a guy friend of mine she was constantly “sending love”. When all that fell apart, she started canceling visits, and stopped attending networking and fundraising events I asked her to volunteer at in my absence. She became the typical UNRELIABLE person. When she was having a hard time, I sent her items to cheer up and help her through a tough time. My mom coached her and helped her network and reboot her resume and career approach. When I needed to share or vent, she kept a cool distance. She had one word responses and constant delayed responses and approaches. My CancerCare group called her “a case of coping via 13 going on 30”. They see it all the time in the support system of people my age.

Case 5: The Parental Units. To me parents are always off-limits. They always get a free pass. Whether they are pregnant, nursing, juggling parenthood and work life or being a stay at home mom. Every type of parental role is worth admiring and is a FULL TIME JOB harder than any 9-5 gig.

When friends make it clear they still want to be supportive even when in mommy mode, I tell them it’s ok you have a lot going on. They hush me and say no I want to be there for you.

I had a good friend, her name is Mandy Tenner and she is one hell of a mom who set the juggling bar high. I had such admiration for her. She came on her lunch break from her legal practice weeks after giving birth. Her mom is a cancer survivor and all around amazing mother and grandmother. So she had fantastic role models. Mandy was back at work breast pumping in front of me, bottling and listening to every word like it mattered. I thought to myself, wow! Where are the cameras? Is the real? She is amazing! She took her lunch break, multi-tasked and didn’t make me feel like that is was a big deal. I wanted to see her and, you know what, she wanted to see me. Do I care about her multi-tasking? FUCK NO. I had so much admiration for her. Her boobs were as glorious as her advice and story telling.

There were my friends who came with their kids, brought toys for them and we all engaged together. I loved it. There were friends who came solo and left their kids with the sitter. They had one-hour windows or more and I was grateful.

I had a friend Lee who ate her lunch with me and ran to the grocery store for me. She even used to put things aside for me when she went to grocery shopping at specialty stores. I felt like I was a part of her family and in her thoughts, even when she was juggling being a brand new mom.

The one thing that was said to me a few times, often somewhat defensively, was I don’t get what it’s like to be a MOM. I may never be a mom, thank you so much for reminding me that I may never experience that. I had to freeze my eggs before chemo and I am pretty sure they will forever remain frozen solid. So if you are a parent, no one says you have to visit. No one says you have to reach out regularly. You are off the hook, so take that hall pass and run with it. If you are pregnant the same goes for you. You will always get a free pass. But if you are game, let me experience your joys of motherhood with you. Just promise you won’t say the “you will never understand the balance being a mom and life”. There are better ways to let us understand those challenges and demands. We can be there for you and in turn, you can be there for us in the right way.

Case 6: The Penter Venter. The friend who comes lock stock and two smoking barrels full of drama. Saying I know my crazy drama life and or relationship will distract you from your illness. The Penter Venter would dump that drama (and negative energy) on me, tell me terrible things about their significant other to vent and ask for advice. As soon as I played Dr. Fix and “solved” their problems they were gone, not to be seen again (until the next dramatic occurrence arises). God forbid I gave them advice they were not ready to hear, then they went completely MIA and became defensive.

These “friends” are the epitome of “pumping and dumping.” No breast milk is involved, despite the pun. They pump you for information on everyone you talk to or had visited, then dump on you like a proverbial snowstorm. Your stories do not distract us. Your inquiries or asking us to play Gossip Girl won’t kill the cancer cells. Yes, we are in touch with a lot of people, but maybe those relationships are still going strong because we keep the content private and sacred. So let’s not act like a CW or Bravo show. Let’s have the same concentration, intuition and depth as a Serial Podcast. We value your time and want you to see our value you as more than someone to tell us your problems.

Case 7: The Bandwagon/Group Visitor. There were those kind of visitors who could never visit you alone. They always made sure it was a group visit. I always wondered why they couldn’t have an intimate visit. They don’t GROUP TEXT ME SO WHY GROUP VISIT ME? When they came they never addressed how I was feeling. Visits felt like watching a Ping-Pong match. I was in the middle of the group conversation, but not an active participant. It was like they were pre-gaming for a night out, forgetting this wasn’t another social call. Were they scared to talk about what was going? What triggered them to want to make sure they were never alone with you? It is tough as a patient to have large group visits. I was lost in the shuffle and felt as if no one wanted to address why they were here with me.

The others were bandwagon visitors. They found out a certain person visited me and wanted to arrange a group visit with those people they admired, had a crush on or hadn’t seen in a while. I loved more than anything to bring people together, especially those people who had lost touch or seemed to want to make a connection. I always wondered why it has to be while visiting a sick patient. It made me happy (in many respects) bringing people together, but sad because I barely said two words and after I was left feeling a mixed bag of emotions. Those visits had me on the sidelines watching a reunion taking place where I was just was a bystander in my own visit and illness. Now this is just me, but I felt a sense of sadness after everyone departed. As if visiting me was the holding area, the green room, the pre-party for the bigger and better event that came later on.

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Towards the end I felt a real different sense of what my life should be. I did not want to get involved in anything that resembled gossip, drama or overall NONSENSE.

I was able to initiate and create peace with everyone I had hoped (except one hold out and my father). For the latter, I sent videos showcasing my love and life lessons I gleaned from him on a weekly basis. My father and I were not at all at odds. There was nothing but genuine love between us at the end and always. I just wanted his final chapter to be filled with the same peace, comfort and support he bestowed upon me so generously and effortlessly. My friends all took turns during their final visits videotaping me and sending the videos to my mom. My mother showed them to him so he could see and hear me and ignite moments of cognizance and memories. If you would like to get a sense of what the 90-second messages looked and sounded like email my mom (UNDER CONTACT US).

Towards the end of my life, I started to embody and imbue a modified mantra of Patrick Henry at the Virginia Convention in 1775, “Give me the liberty to be forgiven or give me death and let me be forgotten”.

I started to see people and life very differently. I used to want to be WELL LIKED BY EVERYONE, even people I DIDN’T CARE FOR. The irony was I spent so much of my time taking on the innate desire of being well received, regarded and lauded (both personally, professionally and academically) that I started to lose sight of what mattered and who mattered. My worst fear is was that someone would not find me humorous or charming. That they wouldn’t see my humor and connecting people was my healing tactic. That they would see the mask I was hiding under. They would notice that I was in pain. That was a perspective I only gained as my illness progressed. It also changed as I realized the one person I had not made peace with was also obsessed with the same “likeness”. It all started to make sense that in order to accept that I wasn’t going to be able create peace with that person, I needed to first make peace with those self-aware notions in my own life. I can’t be mad at them if maybe I was just mad at myself.

When I first got diagnosed I welcomed everyone with open arms who visited. Even if I secretly resented the fact I was only hearing from them because I was sick. Letting people come by who pretty much did not really like me. People who were visibly uncomfortable while visiting. People I strayed away from saying (more than smiling and reciting the usual pleasantries at events) and people who made my formative and professional years HELL. I wasn’t sure if they pitied me. I also was unsure if they wanted to make peace or tell people they had visited me. One of them didn’t even want to engage with me and just brought board games. That tactic really confused me because to them I am sick my mind is simple and games were the only distraction? I don’t know why I let it all in. There was no contest or prize for the person with the most visitors. If there was why did I want to be in contact and be supported by everyone?

I let people come by I knew were using me for set ups, to hear about people they knew I was friends with, to catch a glimpse of a celebrity, see photos and videos I kept private or hinting if they could go on my social media accounts and eye-spy and eye-stalk.

I was the friend who would see your staging of a play in some dimly lit small space Off-Broadway. If you were a musician I would promote and attend every one of your performances. If you were in charge of an event or an event promoter, I would attend, promote it and find raffles. If you owned a small business I would make it my eatery or watering hole or have all my friends order from you. Do you want to be connected to people from Team in Training, Relay for Life, Race for the Cure or Parkinson’s foundation? I will connect and in turn I will provide you with the right, friends, trainers, resources and overall support. Did you need interviewees or subjects for your online shorts, an actress for your ad or film, a job or job interview, an introduction to someone who was the right business or personal connection? I was your go to.

Why did I want to be the GO TO? Why was I unsatisfied with being liked by a few, instead of known by many? I also felt the need and constant pressure not to be just one in the crowd, whether it was my fashion or my humor and composure. I thought maybe it normalized me. I always felt the need to go overboard when someone was feeling down or conversely celebrate someone’s triumphs, milestones and achievements. That could only leave me with disappointment regarding my own highs and lows in life.

I wanted to be known and stand out. I guess I saw a friend from my formative years who was always trying so hard. She used to be the subject of bullying and mocking. In my later years, I saw her constantly asking people for definitive plans and her awkwardness was evident and people would put her off just the same. I felt awful for her. She was a smart woman and she knew she was being put-off and it only made her try harder which was difficult to idly observe. She deserved better. I just didn’t want to be that person. Why did I try so hard at being liked, when I could have been fully concentrating on healing from the outside within? The mistake of the “like syndrome” was a mistake I only remedied with a learning curve.

I was also saddled with “the over sharing syndrome”. These were people who came and visited and would over-share like crazy. Letting you in on things in their life you never knew or should know. It will lift your spirit. Whether it was telling me details of their personal and love lives, professional and personal bullying, hidden secrets and personal traumas. Then I felt the need to over-share even though I stray away from doing that as the norm. I don’t want to know if you actively cheat on your husband/wife/fiancée, or that you snoop on your significant other and delete messages and read them all or that you are being emotionally and physically abused. If you don’t want to leave that person and end that relationship on your own what can I do? I don’t want to know the person who is your best friend is actually your nemesis, or that your future husband/wife is evil and it’s too late to turn back. Don’t be mad at me for giving you advice you do not want to hear.

As time went on, my friend Evan Hodes and I had a running joke about how “over it” we were with “over-sharing and “over-posters”. My friends Robin, Valerie and I had a nice thread going of sheer and simple over-sharers. I became disillusioned with people who felt the need to share every little detail of their life to normalize themselves. To post every little thing you do, document everything because if you don’t (it’s like it never happened). To constantly check in and tag people you are with, having opinions on every trending topic, post about every death of a public figure, the list goes on. It looked like everyone was trying to prove something to the world, as if to say “Look at me I am untouchable bitches”.

Towards the end, I had more clarity and self-awareness. I didn’t have to vocalize anything but my awareness of myself. I remember I did a massive social media purge, but I wasn’t one of those attention seeking/self-doubting assholes who post “If you are seeing this you made the cut”. One night after I sold my company and had to sell my Twitter account, I felt like I had lost a sense of control and power. I wanted to take the power back. I saw the new owners of my company engaging and posting these amazing posts and I saw they were interpreting things differently and in a new light. Their self-awareness of how to properly engage and encourage took them minutes. That kind of awareness took me much longer and I admired their courage.

On a sleepless holiday night, I conducted a cleansing purge on social media. I went from around 4500 friends on Facebook to around 1400 something. I started removing 1500 followers on Instagram and un-following just as many. It was something that I could do personally to feel a sense of control and empowerment. I didn’t want people to have access to me so to speak when we no longer spoke. I kept some people around here and there but mostly purged or created limited viewing capabilities for them. I did the same thing with limiting who and what I see on my respective feeds. It was my way of limiting the people I felt were limited. It was also helping to bring positivity in, while seeing small specs of wonderful and humor and sarcasm (which brought out the best in me and in them). Thank you Josh Jashinski for that.

I started to be more aware of the energy people brought in online and left offline. The drama people created by posting things that they were begging people say “Hope you are ok” or “OMG”. I strayed away from people who needed attention and validation and started to see there is joy in the mundane, the tender moments, the private moments shared by you and not viewed by many. I started to accept a life of keeping to myself and loving myself. I was ok with the fact my life started to resemble less of a scripted and documented BRAVO show and more of a PBS Documentary or a slow-moving, yet insightful, 60 Minutes segment.

Is it helpful?
Is it something that has gone viral and might have already been sent to the recipient?
Is it an image you think will induce instant happiness in everyone (vacation pictures, sunsets, puppy pictures and baby pictures)?
Is that a fair assumption?

I always appreciated outreach but there were times when everyone was sending me items where I did a double take. I had a sweet childhood and high school friend who would send me anything that went viral after the fact. For example, kind of how our parent’s generation posts about videos and articles as if they just saw it (but they are weeks if not months old). I may have been taking a reprieve from social media, but I still watched all sorts of news and kept as up to date as I could. It was my odd way of staying and being relevant. This friend would always tell me to go on social media to check out someone’s post, a dog video or post gone viral or to see pictures of her kids or our friends kids. So I knew she didn’t really get what a social media reprieve was. Is that the only way to share, connect and bond? So when my friends would send me the serial podcast telling me to check it out, funny or die videos, anything that trended anywhere I felt kind of simplified. Thinking I’m so off the map I had never heard of any of these things or to be happy I had to go on social media or experience these items to be happy. To understand what the masses were enjoying and were engaging in would bring me instant joy and inclusion.

I had friends who constantly sent me puppy pictures, baby pictures, pictures of their vacations or scenic pictures they took saying, “I know this will cheer you up and make you smile”. Will it? Did it? Talk about putting the faux in FOMO syndrome and missing the mark by putting the “ass” in assumption. I knew they meant NO HARM. They just weren’t thinking. Sure those are images associated with every day smiles, but when you are taken out of the moment and not able to participate in life, those messages miss the supportive mark. I am also older so puppies and babies have a different impact now. I don’t feel the same automatic excitement I would have if I were battling my disease as a child or teenager. See our supportive imagey tab for more help sending images of support.

I think these forms of outreach have such good intentions, but they also fall in the category of saying something when they don’t know what to say. Sometimes it’s better to say nothing or choose an inspirational or supportive image when you do not know what to say. Those type of images associated with “happiness” are discounted during times of illness and times of personal and physical struggle. We need a different form of support than just googled images, photos we think make everyone smile, or viral videos. We need more from you. We need people to be more proactive more than anything.

So don’t spam us when you reach out. We are trying to keep our inboxes and message boxes clean and empty. We literally dread having to click, read, respond in an expedited manner. We need time, we need space, and we need support.

If something went viral, we probably have about 20 people before you who sent it to us. Want to help? Please send us supportive articles, informative medical, group support or alternative health articles. You can even send us businesses that can aid in our nutritional needs and that deliver locally or nationwide. Think outside the box. Find resources regarding transportation to take us to appointments and procedures. Send us technological items we can have with us in the hospital to make our stay more bearable. Find a way to get us our medication delivered or help with our nausea or fatigue needs. Find ways to make sure our laundry is taken care of, run errands for us or find innovate ways to get our food down and digested. Just think and relate to us along those useful lines, no one likes canned spam in any form.